Rambling On…

Working is hard. I think it is hard for most people because it is something you have to do for so many hours of your life. Some jobs are harder than others, but having to put so much time and energy into something can become onerous under the best of circumstances.

In many ways, my job is easy. I like what I do. I enjoy learning the latest technologies and solving problems with logic. I work from home. If all was “right” with my brain, I think that I would probably be making a lot of money working for someone else right now.

All is not right with my brain. I am autistic. I don’t want to get into an argument here about how my brain is just “different” or how the world should be accommodating to my needs. I believe that those things are true, but they are not factors in my continuing quest to live a happy life without being a burden on anyone.

Somewhere, there exists a perfect balance between doing enough responsible things that I feel like I am contributing something to the world and to the people I love, and having enough downtime to stay sane and recover enough energy to do more of those things. That balance is hard for everyone, but I think it can be especially hard for autistic people.

I am easily overwhelmed. Too many sounds, lights, colors, thoughts, people, feelings, or whatevers can drastically shift the balance and render me completely useless so that thinking and speaking sometimes become insurmountable tasks.

There was a brief period of time where I had everything pretty well aligned. I was living in California, taking meds that worked pretty well, was on SSI and working as a part of their PASS plan. My monthly SSI check was less, the more money I made that month, and if I made over a certain amount of money, I would not receive a check at all, but still got to keep my Medi-Cal benefits (health insurance). I could work as much as I could handle and I could ‘not work’ as much as I needed to.

When Karen and I moved to Baltimore, I lost my SSI because we no longer lived in our house, so it was considered an asset. Now, we no longer have a house, but we are married and I no longer qualify for SSI for that reason due to income.

I wish I could get SSI again. We are having a hard time financially and I am having a hard time working as much as I need to. I am having a hard time working at all lately because I can not do what I need to do in order to be okay enough to work, partially because of the stress that comes from needing to work. It is a vicious cycle.

I try to work, but I can’t think. I know that if I went to the water or did something else that makes me calm, I would be able to think clearer, but I feel like I should not be taking time off work to do that. Eventually, it occurs to me that since I am not working anyway, I may as well do something that will make me feel better, but I am so confused and stressed by the whole process that I can’t get my brain organized enough to leave the house. If you are a person who can think without problems, you may never notice the amount of steps required for a simple act like leaving the house. You have to stop what you are doing. You have to remember what you want to do. You may have to put on your shoes or your coat. You have to go to the door and open it and lock it back up, all while remembering where you are going and how to get there. You may have to drive or take public transportation. Forget about it. You can’t.

When I was on SSI none of that was an issue. I didn’t need to worry about not working enough because I was covered if I didn’t. Now, the less I work, the less money I make, and it has a direct impact on my and Karen’s quality of life. I have marketable skills and I work way more hours than I should need to in order to make a living wage, but since it takes me so long to get things done, and since I can not work a “normal” job, I barely make enough to supplement Karen’s income enough for us to pay our basic living expenses. I am lucky that we both have family who help us sometimes so that we can have a pretty good life, but constantly trying and failing to make my business work in a way that would allow us to stop worrying about money is wearing on me. I am exhausted and sad and ashamed and unable to do anything right now other than whine about it to the internet. You’re welcome 😉

Thank you for sharing, I completely relate to what you wrote, except my entire family has turned their backs on me, since I was very young (16yrs old) due to their own guilt & shame for not assisting me when I require help and I don’t have a partner either, it can be very lonely & hungry place, in my world.
I do have two wonderful dogs who love me & keep me alive.
Early detection & support is very much needed for aurtistic people, we have natural super powers that should nurtured not shunned.
It does help to know I not the only person in this world dealing with these issues of day to day living. Thanx again for writing this post.
iLana-Jane Sydney Australia